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will this spasticity ever go???

Hi guys,

Been for my second mri today. went ok better tgan the last.

What I wanted to ask is will this spasticity in my legs ever go? I know ive only had it from april but Ive heard of people never getting over it? Its making walking so hard and im getting frustrated. Also, how common is this level of immobility at the beginning of the disease? Im getting concerned.

Thabks guys.

kel

x

Hi Kel, Are you being treated at all for it? Mine has never gone away by itself, but is eased considerably by medication, including baclofen. Although some people recover well from early relapses (assuming RRMS would be the type you have), there is an increasing tendency for some residual problems to remain, with successive attacks, or even just the longer you have had MS. Sometimes, it’s a case of learning to manage symptoms, rather than getting over them. A combination of physiotherapy and medication may address spasticity to some extent, although I’m not going to claim it’s a complete fix. But it isn’t something you just have to live with, without trying anything. Have you told your doctor/nurse/neuro just how bad it is, and asked for help? I think I was first prescribed baclofen at least a year after I needed it. I didn’t realise how much I’d been putting up with, 'til I tried something that helped. Tina

hi Tina,

Thanks for your reply. Yeah I’m on baclofen, it has helped to a point, I noticed alot at first as I was struggling even in the house. However its still so bad outside when i do more than a few steps i get stiffer and stiffer. Even my toes curl under. Its getting painful to walk and exhausting. I really feel i need a chair outside as i cant do even around a shop anymore. I have a toddler i cant chase if she runs.

Its just hard waiting a dx. I think im beginning to worry its ppms. Really since Christmas ive only had 2 months where my main symptoms went, but i did have vertigo still with fatigue, and couldnt stand from kneeling without help etc.

I will ask about physio, thanks . maybe theyll let me once i have a dx. My consultant saw how bad i was walking and asked what I’d done! uuhh.

How do you manage outside the home with longer distances? Have you got rrms? Sorry to waffle but this forum is my new best friend! No one else understands.

Thanks again.

kel.

x

There’s no way of knowing for sure Kel. I’ve heard of people recovering, but I also know of people who haven’t. It’s early days still, but neurophysio and muscle relaxants should help. If your baclofen isn’t working properly, you may need a higher dose? Karen x

hi karen,

I have sent a reply to tina, but its not on here yet so if this comes first its all going to get confussing lol.

I have found im waking up gasping for air so assuming sleep apnea. Wasnt sure if its another symptom or the baclofen? when i mentioned it to doc she just widened heys eyes and said nowt! so not sure if I can higher dose?

have you or you heard of ofsleep breathing issues?

kel

x

Baclofen gave me sleep apnoea, but not till I was taking 45mg a day. If you’re on a low dose, I would be more inclined to think it was a coincidence, but it’s something you should get proper advice on. Sleep apnoea should be properly investigated anyway - it can cause lots of problems. I’m surprised your GP didn’t refer you. A quick test of the baclofen would be to reduce the dose and see how you sleep, but then you’ll have to put up with worse spasticity during the period :frowning: Not ideal :frowning: If it does turn out to be the baclofen, you could maybe try tizanidine instead - hopefully it wouldn’t have the same side effect. Kx

yeah did try that over bank hol weekend. but as you say only on 30 a day so low dose.

Ahh the trials hey.

How are you anyway?

x

Hi, I have asked this question re spasticity before too and I have read loads and loads about it. I am in limbo but had an attack causing a cervival lesion in 2008. I recovered well from that attack but nearly exactly a year later I noticed my calf becoming so tight after a long walk. This has progressed and I have been told that it is spasticity. I have read that spasticity can occur sometimes months after an initial injury than can progressively get worse over a period and eventually plateau. I think and least I hope that I have reached that plateau stage. I do take baclofen (30mg / day) and 4mg of tizanidine and night before bed. I cant take the tizanidine during the day as it just puts me to sleep.

To be honest I think spasticity runs a coarse and the muscles dont recover the way sensory stuff improves. My neuro physio says that she has seen people get botox injections and after several jabs the muscle have forgotten to be spastic and improve. My neuro is against me tyring it which is annoying!

Moyna x

I’m good thanks :slight_smile:

Forgot to say - I think you’d need to drop the dose for at least a week - it stays in your system for a while.

Kx

hi everyone,

Thanks monya. I will certainly mention the botox to neuro when i get my appointment, it at least gives me some hope. Im just going to try remain optomistic that this will ease, otherwise it just gets depressing? Have you not got anymore tests being done to dx you?

Karen, I will go back to the gp and see what can be done, including maybe trying something different. Thanks again.

Thanks for the support everyone x